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Old Sat Aug 27, 2016, 01:37 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 721
Hi Meri T,

I'd encourage you to watching this video on MDS by Dr. Roboz. It is an excellent introduction.

https://www.pathlms.com/aamdsif/courses/775

DanL's explanation is great. The only comment that I would have is that a normal HGB level for women is lower - around 12.5-15.5 depending on the lab.

A monthly blood check is not unusual. You will want to know what is going on.

If you are lactose intolerant, and many people are as they get older, you will want to avoid all dairy products (milk, butter, cheese, ice cream, etc). Eggs and raman are fine. Some people are allergic to other proteins in dairy besides lactose, so it is best to stop all dairy products initially to see if things improve for you. If they do, you can try lactose-free products and see if these can be tolerated. If things don't improve with stopping dairy products, something else could be going on. Some autoimmune conditions can also mess up your GI tract.

Your case seems complex, especially given the unusual iron abnormalities and normal cytogenetics. Are you taking any medications or supplements?

It is good that they are going to do more thorough testing of your organs. They need to determine the cause of your abnormal iron levels. Keep asking them about it.

I hope you find some answers!
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53 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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